"ROSE," 82, WAS ADMITTED to my unit near the end of my shift after experiencing a hemorrhagic stroke. A neighbor who'd found her lying across her bed said she was drifting in and out of consciousness. Rose's neighbors acted quickly to get her to the hospital, but no one knew how long she'd been lying there. The neurologist said the damage from her stroke was severe, and her chances of surviving even a few more days were slim. Her family was on vacation; they rushed back from the beach and struggled all night with difficult decisions.
"Would you let the doctor know that we've decided on hospice," Rose's younger daughter Amanda said softly, her voice cracking as she choked back tears. Rose's adult son, who was mentally delayed, stood by the bed saying, "Wake up, Mama. Wake up."
It was going to be another busy day on the intermediate care unit. I had two other patients. One new admission during the night was high acuity. My third patient was scheduled for procedures throughout the day. I wanted to stay with Rose's family longer, but I had to rush down the hall to my third patient.
Later that day, Rose's older daughter, Susan, and her husband entered Rose's room. After brief introductions, they whispered over some papers they pulled out of a manila envelope. Amanda said in a hushed voice that she and Susan didn't get along. In fact, Susan had seen very little of the family in recent years. "I hate that she has healthcare power of attorney. The only thing we've agreed on so far is that Mom should go to hospice," Amanda said, blinking back tears.
I explained to the others in the room what we were doing for Rose. They replied with blank stares and a nod of the head. While I helped the son give Rose more water, Susan told me they'd be back in an hour.
"She'll still be able to talk to us in an hour, won't she?" Susan asked curtly. Rose was barely mumbling audible sentences, drifting in and out of sleep. I told Susan that although Rose appeared to be weaker than earlier this morning, her vital signs were currently stable. I started to talk about a slight change in Rose's respiratory status, but she picked up the envelope and left with her husband.
A difficult conversation
When I called the hospital's hospice unit about Rose, the conversation didn't go very smoothly. The hospice nurse was concerned about whether Rose had received a seasonal influenza vaccine, a requirement for all newly admitted patients.
"That should have been done by now," he stated flatly.
"I'll check with the family," I responded. "But I'm not sure that's all that relevant at this time."
The hospice nurse expressed concern about transferring the patient to his unit, worried that she might die right after her arrival. "We're here to help patients through the dying process, but if she's about to die now, we won't be of any help. She may as well stay there." I recognized how stressed he seemed.
"I wish I could predict how much longer she has; her stroke was severe. I also wish I could continue caring for her and her family. The family is really struggling with the situation. They've been overwhelmed with stress. But they've decided on hospice care and seem relieved to have made the choice. I agree that hospice care is best for Rose."
I decided not to mention the concerning family dynamics at this point. I hoped the situation would resolve itself. After a few seconds of silence, the hospice nurse replied, "If you could wait until the extra nurse comes in later, that would help. I would hate for them to come while we're so busy." After hanging up the phone, I wondered if moving Rose to hospice right now was the best choice.
Challenging questions
Rose's son was sitting at the bedside holding his Mom's hand. "She's sleeping," he said, smiling. Amanda said she wished she'd been able to convince her Mom to come with them on vacation. "She loved going to the beach," she said, as her voice trailed off. Rose stirred less and her respirations were more labored. Amanda dabbed a tissue to her eyes and thanked me for all I was doing for them. I fought back my own tears.
A few family members scurried in and out of Rose's room, whispering in dark tones. They stared at me as I brought in more chairs.
"How much longer does she have?" Susan demanded. "If we come back in an hour or two, will she be able to sign some documents?"
I didn't have time to reply before she and her husband fired off more challenging questions. Amanda tried to talk to her sister, with no luck. I offered to call our hospital chaplain and a social worker to help with any legal issues. They declined, saying it was very important to bring their own lawyer in as soon as they could. My heart sank.
I wanted to talk to them about dying. I wanted to explain more about this special life event. I wanted to talk about this beautiful lady, their mother. They just wanted to get her affairs in order.
A waiting period
Later, the family's minister arrived. After speaking with Amanda, he went to the bedside and talked to Rose. I slipped out of the room as Amanda shared memories of baking cookies, planting flowers, learning to sew, and trips to the beach together.
A phone call from the hospice unit told me it would be a longer wait than anticipated before I could move Rose. I was secretly relieved. I wanted to keep caring for her until my shift ended.
As I returned to Rose's room, a well-dressed man closed a briefcase, bid the family farewell, and left. The family shifted their attention to Rose as I approached the bedside. She wasn't talking anymore. Her breathing pattern had slowed and become labored as I stood in the room with them. I wasn't expecting this to happen so soon. I confirmed Rose's advance directive that no heroic measures be taken. Rose's son looked confused as the minister spoke softly with him. I paged the physician to let her know Rose was less responsive and had developed a Cheyne-Stokes pattern of breathing. When I went back into the room, her respiratory rate had decreased to 4 breaths per minute. I joined hands with the family as we circled her bed and the minister led a prayer. I was thankful the whole family joined the circle; the two sisters held hands tightly.
Then the monitor above Rose's bed alarmed. I'd forgotten to remove Rose's heart monitor! If only I could reach the silence button. But I was too far away. The alarm pierced the prayer with its announcement. The family was silent. I noted the time of death from the clock on the wall.
Rose's son was confused. "Is she dead?" he asked. He didn't seem to hear what anyone said. Susan quietly stared out the window. As I stood beside her I resisted the urge to hug her. Her arms were tightly folded across her chest.
"I really did love her," she whispered.
"I know you did," my voice choked. She looked at me, and a tear rolled down her face.
"Thank you," she said. Then she left the room.
I was tired. I somehow made it through the last 4 hours of my shift.
Reflection
As I left the hospital that evening, I couldn't escape thoughts of Rose at home alone while her family was out of town. The grief and the strain the family was going through. Rose's son, at her bedside, confused about death. Some family members so worried about business affairs. The stress the hospice nurse was experiencing on his busy unit. It all echoed in my head.
So much was going on as I cared for my three patients that day. How I wished I could have spent more time with Rose's family. I wished I could have lessened the tension between the sisters, if just for a day. I wished I could have helped Rose's son understand what was happening to his mother. The frustrations of too much to do and not enough time overwhelmed me. I cried all the way home.
The next day I recalled what one of my favorite nursing instructors had said about difficult days. "Reflect on those days," she stressed. "Such days will stir up a wave of emotions that, with a bit of reflection, you will learn from." I filled a few pages in my journal with thoughts and feelings about my experience with Rose and her family. I read articles about death and dying in a hospital setting to learn more about best practices. Thanks to Rose, the next time a patient and their family need my help with the dying process, I'll be ready.